Dec.28, 2009 In U of M hospital

today was a very emotional day for me. Steve and I were scheduled to arrive at 7:30am, we spent the night in fear of a long drive and weather. I was "supposed" to be getting a biopsy and a shunt placed in my liver called a TIPS. We arrived and were told that the radiologist scheduled to do my procedure did NOT want to do a tips. The reason we were told on arrival is b/c it was his first day back from vacation and only my liver surgeon thought it was possible. He never really showed it to the radiologist like we had thought, and today was the first time he saw my CT follow up since the last procedure he had done.
Like he said, why put a permanent thing inside of you when your liver isn't failing. People that get these have liver failure and by by-passing my liver we only set you up for future problems. You are young, you are a mother, and I do NOT think this is the best interest for you. Do I know what is? No. We need to have a biopsy and test your pressures and see what is going on today and wait for the results of your biopsy and then we can determine what the next step will be, but only by consulting with your liver surgeon, me (the radiologist), and hematology.
So finally around 11am I went into the cathlab. They went down my jugular vein in my neck, did a biopsy and measured the internal pressures within my veins. I got out at 12:30pm.
Very very bad news he said.
From the CT one month ago, you are majorly worse and severely clotted in almost ever single vein within my liver. My Portal vein is almost completely clotted again. Right now they have no idea what to do.
So the plan:

• Wait for my liver biopsy results
• consult hematology again b/c we MUST get to the bottom of my clotting problem
• in a week I will be back here at U of M and either have a a major surgery, intense recannalization of all my veins (again, this is what we did last time, cleaning out the veins) or put a TIPS shunt in if indeed my liver is now failing b/c of all the blockage to my liver

I had a breakdown a few times throughout the day. One, b/c my family physician told me to go off my coumadin and it looks like during that time, I threw more clots, I can NEVER go off blood thinners. My PC doesn't take me or this disease serious and I feel like no one is listening except when I am here at U of M. Two, WHY is this happening!! What is wrong with me? Something MUST be wrong for me to clot like this. Like Cheryl my friend said, this is no longer the "fluke from Luke". This is VERY very serious. Not only serious but sooooo confusing and no one knows what to do!

Then go figure, I take some pain meds when I get to my room b/c my neck incision hurts so bad...Well, about 3 hours later I am dry-heaving and puking in the bathroom b/c I didn't eat with the meds and they made me sick. This ripped open my incision in my neck and I started bleeding all over. Talk about pain now! This time I am dealing with the pain and I will stay away from pain meds. I had to change rooms b/c my neighbor is so loud, talks on her cell phone and has it ringing NON stop, talks about diarrhea and runs to our bathroom every 10 minutes. I didn't ask, my Nurse actually couldn't take it anymore and decided I needed my own room. I was grateful :)

I have no idea what to think. I think about my awesome husband by my side, and my beautiful children at home. I WILL survive, I will be there for them someday 100%! I think about all my friends and family and the good Lord that holds my hand each day. Without the strength of the Lord I honestly don't know how I would make it. I think about giving up, but I can't.....Somehow, someway, this will come to an end, and I pray that it will be but a distant nightmare...

Goodnight. I am going to take some Ambien now and knock myself out for the night.

BACK TO U OF M

I have a very serious, rare and complicated health problem. I have blood clots in my veins of my abdomen. Primarily located in my liver, portal vein, and superior messenteric vein. Like my Dr at U of M says "I have a plumbing problem". These clots are causing back pressure in my veins and not allowing the blood to flow freely therefore giving me high blood pressure within these veins (Portal Hypertension). This back pressure is causing problems. The blood can't get where it wants too and quickly as it wants too so it has decided to bypass these clots and create new veins, giving me large veins in my esophagus that could hemorrhage. My Gallbladder is affected, Spleen, liver, and intestines.....

Why do I have blot clots? No one seems to know. I had colon surgery 10 years ago, there is speculation that it came from that. I could have been born with this and it not developed until now. It could have happened during one of my pregnancies. We may never know. When you have Dr's arguing about the course of action to take, and place you in the middle, they say "you decide". YA RIGHT! Very nerve wracking!

I have my hematologists working at solving the "why" factor. Why do I have blood clots??? I have my liver surgeon working at "fixing" the problem. He doesn't have a clue why or what, he just knows or thinks he can find a way to fix me. I have my Gastrointestinal Dr. working on the problems that have been created due to this situation "wrapping my varices", so that I don't hemorrhage.

Then there is the question: Stay on blood thinners or not? Some say yes, some say no. Some speculate saying -she could bleed and hemorrhage from the veins in my esophagus and this could be life threatening and almost unstoppable if she is on blood thinners.- if she's not on blood thinners she could throw more clots and essentially cut off the blood supply to my liver and everything else. Hmmm...

My husband is so good at describing all the variables and ideas, and the thinking behind it all. I told him its a good thing I have him b/c I don't even understand it all. I sit in the appointments crying and he is my ears listening and being level headed. I thank the LORD that I have somewhat of a medical intelligence from my career. If I didn't! Oh my word, I would be so lost right now!!!! Even more so than I am!!!! Its a scary world out there in the medical land. Different Dr's have different opinions, they all talk lingo about you hoping you won't understand...thinking that I have no clue what is going on. And really, I am to the point that no one really knows what to do.....

So, I put my faith and trust in the Lord that he will guide all of my Dr's to find the answers and do what is best. I can't be the only person out in this world that has this problem! Most people with this problem have liver disease or failure. I don't. Most people are little kids, I am not.

So, its on to option 2. A procedure call "TIPS." They are going to attempt to place a shunt in my vein to bypass the clots and get the blood flowing. Will this last forever? No one knows. Most people that get tips have liver failure and die before they ever have to find out if the TIPS actually could last forever, they get it to buy them time. In my case, I don't have to worry about my liver b/c it isn't in failure and we all hope that I can live a long time. So will the shunt work and how long, or will it just clot off too?? All things no one knows. But I guess it is worth the try and see how it goes. If this isn't possible then it is surgery. What kind? There isn't even a name for it. He would create a surgery for me, create a new vein system, really never done on someone else. SCARY!

I am having problems sleeping these days. My mind is just a racing. So many things to think about. If anyone out there knows ANYONE or ANY dr. that would give me a second opinion or thought, please let me know. Otherwise its back to U of M in a week or two for our 2nd attempt.

6th SCOPE/BANDING OF VEINS

I cannot sleep. Yes, I took a nap when I got home b/c I was so sedated, but I normally sleep fine at night. I have a ton of things running through my brain and cannot slow it down. I woke up with pain and unless I stay on top of my meds, the pain is unbearable.

It takes a whole day to recuperate and then some for me. All for 6 minutes of a procedure!!! How is that possible? I arrive 1 hour early, stay in the surgical room about 30-40 minutes, and then 2 hours in recovery. Come home and sleep the sedation off, and if they do banding, remain on as much drugs as I can and rest....Its terrible. Especially for me b/c I am NOT one to sit around and I never take naps. I felt completely withdrawn from my kids all day b/c I couldn't really do anything with them. I saw them, but its just not the same.

Dr. Serini was really quiet. Hardly spoke a word to me. I think its b/c there is nothing else he can do. He doesn't know why this is back, why it happened, and he doesn't know what they are going to do. He is a colon dr. not a blood vessel doc. He is dealing with the consequences of a primary condition and doing what he can to keep me alive in his realm of his specialty.

He said he has to band me again in a month.....Man it hurts! I have a high pain tolerance but this sucks. I don't know how they do it but somehow they wrap rubber bands around the root of the vein to kill off the blood supply and prevent it from getting larger and eventually hemorrhaging. Isn't that amazing?

He did say he spoke with Englesbe, my liver surgeon to tell him what he saw last week and that my varices are back. I wonder what Englesbe is going to do. I think it means a big surgery, a risky surgery, one that I could die from, b/c thats why we didn't do that option first. We were all hoping that this first attempt would work. I know they can't do nothing b/c I can't live like this. Realistically my veins will eventually hemorrhage and kill me, or the clots will kill me so what choice do I have.....

I know I shouldn't speculate b/c who knows...Maybe it won't be that bad. I just don't want to be away from my kids again. Last time it was 10 days for me and that was really hard on me. They would come to see me in the hospital but they didn't even dare touch me b/c they were scared off all the IV's in mom and Karlie was afraid she would hurt me. It made me cry.
Ok, I guess I will try to sleep again.

Being a MOM- to Karlie and Luke

One of my favorite things in life has been becoming and being a mom. I received a devotional book shortly after having Karlie and it has become my favorite one and I have now read it twice. Its all about being a mom. Here are some of my favorite quotes in it:

"Thank you Lord for the sweetest human experience thus far in my life"
"When it comes to love, until I saw that "+" on a little stick, I didn't know the half of it!"
"Father, I will never be able to thank You enough for my beautiful daughter but with my own life, I will try"
"My children have taught me that I have God-given instincts that I never would have believed until now"
"thank you for awakening in me a new kind of love-a love that shows me a clearer picture of the Love God has for me"
"God infinitely loves my children more!" and He does me too!

I remember a lot of things about my "old" life, the Lisa that could go anywhere I wanted, when I wanted too, no plans, staying up late because I WANTED too, sleeping in...but one thing I don't remember is what my heart was like before I became Karlie and Lukes mom. I can tell you, It has been completely transformed.

Nothing can put a smile on a moms face quicker than hearing little feet running towards the door and the exclaimed "Mommy!" as I walk through the door. The changes in my life are amazingly worth it. Sure I have days of frustration, feeling drained, but at the end of the day I wouldn't trade my life for anyone else's b/c of my children. I loved being pregnant and miss it so much. I don't miss getting them out, and I think I can say with confidence that mine were terrible, if you want to know why, I can gladly explain! (separated pelvis, broken back, 27 hours of labor, 3 hours pushing, both kids taken to neonatal, mom sicker than a dog, allergic reactions to meds...)

Some nights I lay in Karlies bed for hours just staring at her (yes she snores but not as loud as her dad!). Its just so hard to imagine that they are mine, they came from my body, they are so beautiful to me. I sneak into Lukesters room and just treasure the sound and smell of his room, even if he wakes up in the night, he's my last one and I try to treasure the moments b/c it won't be long and I won't be able to hold him in my arms, he's not going to want his mom and my days of cuddling and holding him will be gone. It makes me so sad to even think about it. Soon mom will be tossed aside and it will be on to more important things: school, friends, love (or so you think), sports...

They say life goes fast. Talk to one elderly person and they will bring it up, especially if you bring up the kids. No one told me it would go THIS fast! Sometimes I ask the Lord just to freeze time for a little while, b/c it just doesn't seem fair....The older you get, the faster it goes! They are small for such a short time! Pretty soon they will be off to school, and the days of being home with mom will be gone! Just when you finally realize you need to start appreciating what life you got, its almost done! You can't turn around and do it over so I make it my everyday effort to live it with no regrets. I often think of that song: "live like you were dying" that song has alot of truth to it. I think everyone would live so differently....

I'll be the first to tell you, I think everyone could use a little wake up call. I am not perfect, I am a terrible sinner, I have done so much wrong, I am not a very good wife at times, I am not the best friend I should be, and I am going to fail at being a mom too BUT I know I won't do any of it alone. My family, children, and friends see me all the time, and know me at my worst and it is my prayer that at these times they can see past me, and see Jesus.
That my friends is what has changed, my heart. It needs a TON of work and that work will never end, I just pray that it starts each day with my own little wake-up call, that Lisa needs to live each and every day as if it were my last. I want to do it, I am going to try hard to be a better wife, mother, sister, friend....I know I will fail, but I am going to keep on trying!

Karlie and Luke, not even Grandma Nyenhuis, loves you more than you mom does....Someday when you become a parent yourself you will totally understand how I feel and you will be in awe at the Love a parent has for their children. I love being a mom and you have made me a better person, you have taught me some valuable lessons I will treasure forever. I wish I could freeze time and just enjoy you one on one for days! Mom and dad, thank you for all you have sacrificed on behalf of me and for loving me so much....Its mind boggling!
Lisa

Dec.2009-6 months of freedom

Well for 6 months I have lived the good life. I enjoyed my life to the fullest, went camping a ton with my children enjoying nature, Gods creation, and every moment truly taking in each little pleasure of LIFE.

I knew this time was coming, my 6 month check up. Everything was going great so I was very excited to hear the next step, I thought everything was fine and we could pull me off my meds, the procedure of cleaning out the clot at U of M was successful.

That was until last week. Thanksgiving. Again, I woke up thanking the Lord for life and all the many blessings He continues to give me when I am so undeserving. Went to church, ran 5 miles, (nothing new, my Dr's gave me clearance for it) finished and my stomach started to grow. I had the same feeling in my abdomen that started this whole thing, I was crampy, painful, and started to cry b/c for the 1st time in 6 months I realize that this whole thing just might not be over!

I had a scope today with my Gastrointestinal Dr today. He told me this weekend to stay on Coumadin (blood thinner) b/c he didn't expect he would have to do a thing b/c last time the varices (large veins) in my throat were gone and he did not anticipate seeing anything again. Well, I am sorry to hear the news and was fearful of hearing them from the very start b/c deep in my heart I knew what he was going to say. "They are back, they are large, the needed to be banded (wrapped and compressed) ASAP b/c they are looking like they are going to hemorrhage."

Meaning: my veins are back and large enough to hemorrhage, my pressure inside has NOT returned to normal, working out again has pushed my pressure up and my symptoms have returned b/c the clots have come back. BACK TO THE DRAWING BOARD!

I will be off my coumadin for the next week (good for my veins that could hemorrhage b/c that is scary for them) but it doesn't help with my clots. I hope I am making sense but these 2 things contradict each other and I don't know which they are going to choose. Coumadin=breaks up/prevents the clots Coumadin also makes your blood thin and with varices that is the last thing you want to be on with chance of hemorrhage. I will have them wrapped next week Thurs. and then on the 14th head to U of M to discuss the next step. Option one seemed to have failed, Option 2???? We had one at the time, I know it involves a very serious surgery with life threatening possibilities, but I guess I am there now again anyways.....

Today has been a very emotional day for me. Actually ever since last Thursday b/c I knew in my heart I was not healed as I had thought. I think about what I have already gone through, it seems like a nightmare, and I am scared. It seems so long ago and yet, it is all still so vivid in my mind....I don't want to die and I know that is one of my weaknesses I struggle with the Lord with, I shouldn't be, but I just can't believe all of this is happening again. I also know it doesn't mean I will die, but trust me, it is something I think about, it is possible. We have to do something to help me live a full life and it looks like we have to start over again.....

I just think about my husband, kids, today I just cling to them and savor their little miracles that have blessed my life in SOOOO many ways. I love my children and I am scared to leave them.....
Ok enough,
Goodnight.
Lisa

Summary of Summer 2009

We had an unbelieveable summer. We camped at Grandhaven for a week, Holland State Park for a week, Cottage at Brooks lake, Cottage at Conference grounds, camping at Conference grounds, and we ended it with a camping night in Grandpa and Grandma Nyenhuis' front yard!

We absolutely LOVE camping. We learned alittle more each and every time to make things easier on the kids and mom! I absolutely enjoyed each and every day. It was a beautiful summer for me. Maybe b/c I appreciated life all the more! I look at my children and cheerish them so so much! They are the love of my life and I love being a mom. Sometimes I am not a very good mom and I have my struggles but I pray for their lives, I pray they realize how much I love them, that I would do anything for them, and I pray they have a wonderful life and love their Lord.

Sometimes at night I go in their rooms and just stare at them. They are so beautiful. Karlie is such a sweetheart, big sister, and so loving. She loves her Lukester and I pray they have a wonderful relationship b/c they are all they are going to have! Sometimes she cries when I tell her I can't have any more babies, she wants a sister. It makes me feel bad but someday when she is a mom, she will understand what mom went through.....

Lukester is such a doll, he melts my heart all the time. He loves his mom, and he is such a boy, running, jumping, throwing, screaming, and loving dirtbikes already! I just don't want them to get old. Lord, can't you freeze time for just a couple of years so I can stay where I am right now for....10 years???? I don't want to get old, I don't want my kids to get old. I love the life we have and cheerish the days we have!

CONFERENCE GROUNDS 2009

We have a yearly tradition of going to the conference grounds and staying in the cottages (we had 4 this year) with all the aunts, cousins, and kids.

We ended up having so much fun that we decided to stay another week in our camper. Highlights always include: the candy store, swimming pool, bibleschool and the playground. We also bought a kite this year and the kids had so much fun taking turns flying it.
We watched a meteor shower, and had fun having a fashion show with new clothes from Grandma N! We LOVE camping!!

BEEN AWHILE! (END OF SUMMER)

Luke 1&1/2, Jackson 2, Karlie 3&1/2, Alexis 6, Dylan 4, Kinsley 2 mo., Sophia 3 mo.

We spent a week in a cottage on Brooks lake near Newago with the Jongsma family.

We had a great time and beautiful weather. The kids were so tired by the end of the week, Karlie got sick with the flu for a few days, and that wasn't much fun for her!

The highlights of the week included: 1st time tubing for Karlie, feeding attacking geese, paddleboat rides, speedboat rides, Uncle Dave crashing a Jetski, throwing waterballoons,

and beanbag contests and our new favorite board game (????). We hope to keep the tradition going.

4th of July and Camping Holland 2009

Make a Smilebox scrapbook

Great news, no doctors for 6 months!

My surgeon called me a few weeks ago after my 4th upper scope with more banding of my veins in my esophagus and he told me that everything looked great! My veins were going down, some of them were gone, and the best news: I don't have to do a thing for 6 months. I almost don't even know what to think or feel, its just so crazy to go through all I have in 2 months with so many appointments, procedures....to nothing! Its all I have been thinking about, dreaming about, every waking moment, I wonder whats next......

Its awesome and an amazing feeling to know that hopefully this is all behind me and will only be but a terrible dream to me someday. Yes, I still am on injections but life could be worse, MUCH worse and for the time, I am going to rejoice in the Lord for He is good, and He has blessed me in soooooooo many ways. I have a wonderful life, thank you Lord!

Holland camping 2009

I have been enjoying this summer so much! We got a new camper so this was our 2nd time and we had so much fun. The weather wasn't the greatest but none the less, I love spending time in nature, with the Lord, and enjoying my life right now with my children.

Memories of my first born

Make a Smilebox photobook

We had a great time, these are some of my favorites! Karlie just loved playing in the sand and Luke loved watching the motorcycles, cars, and running the boardwalk (his little legs can just fly!)

Camping in Grand Haven June 2009

So we took our first attempt at Camping in our new camper this year. Karlie is 3, and Luke is 1 year and 4 months. The first night was not that great. It didn't take us long to set up camp being in a trailer is really easy, but the kids would NOT go to bed that night and it was just me, Mom. They finally crashed around 11pm, Luke was up 3 times in the night crying, finally I took him in bed with me and Kar, and he was up at 6:15. Crabby! He wanted to go outside and it was raining, he woke up Karlie, and they were both sitting there crying. Mom loaded them up and we went home, not even 24 hours later! We went home took 3 hour naps (all of us) and took a bath and headed back out. By then the sun was out and all was well. The rest of the week went great! I think they just needed to adjust, its all new to them, its alittle scary away from home, and they loved it!

We had a great time. The weather was perfect, dad came to stay a few nights, and even though mom was DEAD tired herself and it is alot of work with 2 little babies, it was all worth it. The worst part: coming home and cleaning up and getting back to life! I could sit by a campfire all night long!

It was great spending time with my kids alone, playing, riding bikes, going to Arts and Crafts fair, getting icecream, walking the pier and watching the fishermen....Just soaking up the beauty of this earth and all the Lord has blessed us with. I can't wait to do it agian!

Make a Smilebox scrapbook

KIDS SAY THE CUTEST THINGS!!!!

Mom: I am going to have Mrs Jenny show us how to attach the bike trailer to my bike to that I can pull you and Luke behind my bike and we can take bike rides at night.
Karlie: We can do it just like Dad does, put it on our hitch. Oh thats right, bikes don't have hitches. (6/8/09,3 years old)

Mom: I wasn't at the memorial parade with you because I was sick.
Karlie: oh ya, thats right, you were getting new veins in your throat with rubber bands.
(after that statement we had a LONG discussion about Dr.'s and putting mommy to sleep with medicine so nothing hurt, and how did the Dr go down my throat? How did you get the Dr out?)
(6/8/09,3 years old)

Mom: Dad was with mommy in the hospital
Karlie: Was he getting fixed too?
Mom: No, he just stayed with mommy to hold my hand
Karlie: And to give you lots of kisses?
Mom: yes
Karlie: Awe, You should tell him Thank you! That was so nice. (she was so happy!)(3 years old)

to be continued.....

Mom: Great Grandma is going to go to heaven soon, we need to ask Jesus to take her
Karlie: Do we all get to go to the same one?
Mom: Yes
Karlie: Oh yeah, I am so excited to go there, I want grandma to be there, mommy.....I love you mommy, do you want a bear hug?

Mom: Karlie, your gonna be a cool dirtbiking chick! (she just got her new PW 50)
Karlie: Mom, chickens don't ride dirtbikes!!! She thought that was so funny that I would say that, and I thought she was so funny, but she didn't know why obviously. Super funny! (1-6-2010, Karlie 4 years old)

Mom: Karlie, I really don't want you to do my hair, I just did it and I don't want to do it again.
Karlie: But mom, its just alittle makeover and everyone likes those! (April 2010, 4 years old) I have no idea where they come up with such things!!!!!

So my son came up to me this morning with his PJ's unzipped. Thats wierd I thought, until he said "shot" and looked at me, in his hand was a fake srynge from a toy Dr's kit and he gave himself the "shot" in his stomach and smiled at me. It was so sweet! Just like he sees mom do it everyday! He is so smart! (April 9,2010, 2 years old)

Karlie (5): Mom luke just burped and something came out of his mouth!!!"
(I come and look, luke threw up all over the couch! Not going to bible study this morning!:)
Karlie: I looked at him mom and it almost made ME throw up!

Luke and I laying in bed (almost 4 years old) "I'm not afraid of the dark mom"
Me: "your not!!?"
Luke: "nope, Jesus keeps me safe"

A different night laying in bed (Luke was crabby and wouldn't go to sleep)
Me: "boy, you sure are crabby, who did you come from?"
Luke: "jesus"
Me: "your right, you DID come from Jesus"
Luke: "ya, b/c I don't want satan in my heart"
Me: "thats right buddy, you don't. And someday Jesus is going to come again and satan and him will have a fight and do you know who will win?"
Luke: "jesus"
Me: "yup!"
Luke: "YYYYYEEESSSS!!! and gets all excited flipping around"

Luke and I were driving to school to drop something off to Karlie and listening to WCSG, the announcer says, and that was Jeremy Camp
Luke: "MOM!!! Did you hear what he said?!!!!
Me: "Yes...???"
Luke: "HE said Jeremy camp!!!"
Me: "ya???" (not having a clue where this was going)
Luke: "That means we are going to go camping soon with Jeremy!!!" (alittle friend he met last summer at Holland state park while camping. :) TOoo cute!! He was soooo excited!!!

Luke and I were taking a bath (dec. 2011, almost 4)
Luke: Why does your stomach look like that mom?
Me: oh, b/c mommy had a big surgery and from my shots everyday (its black and blue)
Luke: thats gross!
Same day, I went shopping for Karlie (6)
Me: I bought you some new underwear b/c yours is getting too small
Karlie: There NOT as big as yours are they!!!!???

Me: I just don't want time to go fast and I wish we could stay right where we are forever!!! I want you to stay my little buddy!!
Luke: "Do you want me to stop eating?" (June 3, 2012, 4 years)

Luke, Karlie and I were camping at the conference grounds this week and Luke came running up to me and said "Are you not sooo happy that I found this new friend mom?" He was so proud to make a new friend at the playground.  It was so cute!

Karlie continues to say "come on Bro, come to big sissy" (aug. 2012) oh my

Trying to move on with Life

I have to say that I am acting like nothing has ever happened. Do I think about my health and what happened alot? Absolutely. Am I worried? Absolutely. I can't believe that I am the same person sitting here today that I was 2 weeks ago laying in a hospital bed in so much pain and so much mental frustration wondering what to do with myself when it seemed no one else did either.

I don't know if I am done with "stuff"....I wish I was. I feel pain in my chest every now and then and start to worry, wondering if its normal. Sometimes I lay in bed wondering if I am going to die. Will I live to see my 40th? 50th? My kids get married? Only the good Lord knows. Sometimes I struggle with the thought of death and I am afraid of it, I will admit that I am weak when it comes to the idea of leaving this earth behind, my family. Even though I KNOW I am going to such a better place! I know that no one knows when our time on this earth is done, but it gives me fear....I don't want to die. I tell you what, I sure think about the saying a whole lot more "live each day as if it were your last!" I have changed and I am glad. This has all made me such a better person. I can't even begin to describe it but I have so many feelings and so many thoughts running around, things I want to do, people to see, just living and enjoying LIFE!

I have another banding procedure in a week, I cancelled it and pushed it off a few days b/c I just don't want to go! I don't want to do anything else.....But I know I have to. Maybe he will be happy with what he sees. Maybe I won't have to have these "veins" wrapped anymore. That would be so nice!

My kids are awesome. Sometimes Steve comes home and asks me why I go everywhere and do so much with them? Why not? I want them to experience life, I want to explore, see the world through their eyes, be together, and enjoy every moment I have with my kids! I don't care if we are home or away, I just can't get enough of them. God made me a mom and for that I feel so blessed!

Make a Smilebox scrapbook

Letter of Thanks to so many!!!

Dear family and Friends,
I cannot tell you enough how grateful and blessed I am because of you all! What I have been through over the past 2 weeks has been unexplainable in so many ways, and has changed my life forever. I am home, I have returned to being a wife and mother, and tonight I am soooo tired! :) I am trying to take it slow but I think most of you know that is impossible for me, plus, I have 2 little ones that run more than I do!

It feels great to be home and I feel so blessed to have my army of warriors out there praying for me! It worked and God does answer prayers b/c I am proof of it! The Dr.'s were all amazed at the last CT scan and are amazed at how great things looked. The surgeon told me when we were leaving that I am lucky. I think I have a better word for that and it is all b/c of you! I couldn't have made it without all of you praying for me, for holding me up when I was at my lowest, and honestly, I didn't know if I would be seeing anyone again.

Am I "fixed"? No. Do I have something wrong with me? Yes. Am I on my blood pressure meds, blood thinner injections, and more? Yes. But the big hurdle is out of the way and hopefully over time, my body will return to normal. I have a year of tests and lots of blood work, but hopefully with close monitoring, I won't have to have any more surgeries.

Words cannot explain how much I felt your arms around me and the love of the Lord through all of you. It is something that I have never felt so strongly before. Last thursday night something just happened, it was like a light switch inside of me, and all of a sudden my pain went away. After that, the Dr's came with the great news that I could go home, that we didn't have to do surgery again. I cried and cried tears of joy, tears of gratefulness, tears of thanks to the good Lord above. I am crying right now just thinking about it! God is soooooo good!

Thank you, thank you for all you have done. For all of your thoughts and prayers. I could have never made it without you.
Please, share this with anyone you know that has lifted my name in prayer and tell them Thankyou!
I love you all!

Lisa (Steve, Karlie, and Luke) Jongsma

Home, Alive and Free!

My liver surgeon came to say goodbye yesterday and left us with this:

"Don't think that you don't have something seriously wrong with you because you do. Most people with Portal Hyptertension don't have near the extent of internal problems like you have and most of them that have clots, we know why and we can fix them. We could keep doing procedure after procedure to try to "fix" you, trust me, we love these type of "problems", but lets just see what happens naturally. Your portal vein is open and I don't know how but your lucky b/c it looks great in there right now. Try to take it easy when you get home for awhile, but we will follow this situation up with CT's, MRI's, Ultrasounds, and bloodwork for at least a year and hopefully you can lead a normal long life. We will keep you on blood thinners for at least a year, we can't keep you on them forever b/c then we risk something else going wrong. I believe it is from your Pregnancy so as long as you don't do something crazy and get pregnant, you should see your next 50 years."

We left the hospital and the drive was emotional. I just held my husbands hand and cried tears of joy telling him thankyou for being at my side during the past week and a half of this crazy journey in our lives. Everything seemed to take on a new meaning, the trees, being free and being alive!!! I couldn't wait to get home to see my children, hug my mom and dad, and rejoice for being alive. I couldn't stop crying, its just so hard to explain all the feelings and emotions and "stuff" I have been through. Like I said before, my life will never be the same.

I picked my kids up and Karlie just clung to me and it felt wonderful! She kept lifting my shirt b/c she knew I had an owie on my stomach and last time she saw me she was scared to touch me. She was afraid of my IV's in my arms, afraid of hurting me. I told her she didn't have to be afraid anymore b/c mommy is better and she was so happy, and just kept smiling and hugging me. Luke, he just runs around, oblivious to what has been happening in our lives. I am thankful that they will never know and won't remember this time in their lives. To them it was just a big party living at their grandpa and grandma's house's. To me, it felt like an eternity, I missed them so much! I was afraid and thought that I was going to die and never see my children again.

We came home as a family, and it felt wonderful to take a bath! Sleep in my bed with my children in their rooms next to me. I had peace, and I am so happy to be home!!!

I praise you Lord for I am fearfully and wonderfully made!

I have an amazing new appreciation for the body the Lord has given us all. It is crazy! The things we can do and the ways the body works all together is infathomable to me. I have learned so much in so many ways. When you are diagnosed and become ill with something, you immediately go through so many different emotions. For a long time your life is spent on a rollercoaster, so much of it is unknown at first, you don't know what to do. For over a year now I have struggled to find answers, now I believe we are coming close to the end and it sends an amazing peace, a sense of freedom, a sigh of relief, and tears of Joy. For the past 2 months I have experienced "the other side" to my life being a patient:

• had a liver biopsy
• upper endoscopy
• colonoscopy
• 2 more upper endoscopies involving rubber banding of the large veins in my esophagus with more to come in the next months
• swallowed a camera pill
• had 4 CT's
• had 2 Ultrasounds
• 3 MRI's
• spent 41/2 hours in a cathlab suite with laproscopic canulization (rotor ruder)of my portal vein and embolization of my varices
• been sedated for hours and a total of 7 times
• spent 9 nights and 11 days in a hospital
• literally slept away days of my life without ever getting out of bed

The Doctors are all speechless at how busy and active I have been before this without knowing that all this "stuff" was going on inside my body, my body was in panic mode inside without me even knowing it and created a whole new defensive system to keep me alive. Isn't that amazing!

It seems like a terrible dream to me. Something that hopefully will be in my past now, something that will fade away into a distant memory. I can move on with my life, my children ( I cannot wait to come home to you and be your mom agian!!!) I cannot wait to be Lisa, (wife,mother,sister,daughter,friend). I am on a mission everyone. Look out, Lisa is ALIVE, I am well, and I am going to live like no other! I love who I am, the Lord has made me perfectly in His eyes and therefore I rejoice!!!!!! Thank you Lord, I am on my knees with thankfulness and praise for making me and holding my hand through this all!!!!!

Lets not rock the boat anymore!

I had a CT last night around 6pm exclusively of my liver and later that night one of my surgeons came to see me and told me heavenly news. The CT looked better than anyone thought it would and everyone was surprised at their meeting.

The clot in my "main portal vein" is almost completely gone thanks to my radiologist that cleaned it out last week, the flow is all open in there. Hopefully after time my spleen will start decreasing in size now that the flow is all open and they don't want to do anything at this time to my splenic veinous system. Like he said "we don't want to rock the boat anymore!". They could keep having a hay-day with me and keep doing more and more procedures to keep fixing me, but for the time, I am doing great, my labs and liver functioning is going back in the right direction, and we need to give my body time to heal and see what happens before we decide to ever do anything else. Maybe nothing will ever have to be done again, if my spleen goes down!

They believe I became jaundice from the procedure done last week, the CT shows my liver bruised, slightly bleeding, and swollen where they entered that portal vein. Also, the collaterals/"new veins" that did create in there compressed my common bile ducts restricting the flow to my Gallbladder but they think that over time this will also heal. Some of the Doctors want to do an ERCP on me now, but my surgeons think we need to wait. I agree.

Why did this happen? I now have a whole team of hematologists working on my case. I have fired my hematologist at home, fired everyone at home, and I am sticking with everyone at U of M! They are running tons of blood work, looking for anything that could have caused this all. We may never know. Some think Lukester, some think my colon surgery 8+ years ago, we don't know. Thats what makes it so hard for everyone to understand and that much harder to fix the problems. Is it going to come back? I will stay on Blood thinners for minimum 6 months and then we will consider going off them if all blood work looks good. Scary b/c we don't know if that will open the gates for it to come back....

I am staying for another 24 hours, one more night and hopefully I can come home!!!! I was so happy last night I cried! I just held my blankie from my kids and cried tears of joy. Give thanks to the Lord for He is good, His love endures forever! I praise the Lord for all He has done, for bringing me here to U of M, for all of my Doctors here: Woodside (floor Doctor who is here everyday for a month! Sonnenday, Engelsbee, (liver surgeons)
York and Lewis (liver Specialist), Dasika (the interventional radiologist), Lisa Glass (Hematologist).
I thank the Lord for my parents, Steves parents for taking awesome care of my children while I have been gone, my sisters for being with me, my wonderful husband for holding my hand throughout this entire journey (he has been awesome and knows so much about me and the medical field now! hopefully this is it he says! :) Thank you friends and family for your thoughts and prayers, I love you all!

I can't wait to come home!!!!!!

Update! We're at U of M again

Monday afternoon I became jaundice after my procedure with complications and my eyes, skin, and urine were very dark yellow/orange, buises covering my body. We were instructed by U of M to go immediately to the local ER. We spent monday night 8pm-Tuesday 10:00pm at Metro and no one was helping us. No one came to explain anything to us, we were being thrown all over between Dr.'s that had no clue about my situation, and Steve and I were both losing hope....It was crazy! We felt like no one was helping us and that no one knew what to do with me. Finally I called U of M agian from my hospital room and they called the hospital and had me transfered by ambulance back to U of M. I NEVER want to ride in an ambulance again! It was cold, very bumpy (the last thing you want when you are in pain), noisy, and even raining on the inside (yes we had a leaky one!)

We arrived here at U of M last night at 1-2am, and things are beginning to be hopeful again. The Doctors, nurses, EVERYONE has been so Awesome to me, so loving, so understanding with our frustration, and they have soooo many Dr's trying to solve the mystery. They do care here, they are doing all they can, I had an Ultrasound this morning, x-rays, lab work, different fluids to treat my jaundice, I have to have another CT, and I will be staying for sure yet tonight. The Doctors are all meeting around 5pm and we hope to have some more answers.

Please keep us in your prayers! I miss my kids so bad, I even have a"blankie"of Lukes to make me smile and comfort me, resembling both of them b/c my kids LOVE their blankies! This has definitely changed my life forever.
Love Steve and Lisa

I am home

Well, I am home. This is the first time I have really been awake all day and I am going to try to quick say alittle while I can.

After 4 1/2 hours spent in a cardiac interventional cath lab suite things looked much worse than had anticipated. The first 2 options were not even possible nor even attempted, so I didn't get poked there as well. He started off doing a veinogram, injecting xray dye into my veins to give him a better look. This is when it was discovered that my clot had progressively gotton worse, and that there were now more clots further up the river in all the smaller veins leading into my liver. He had only one option to make a few incisions directly above my clot on my abdomen and he did get into that portal vein and cleaned out the clot as best as he could. He also discovered more varices that we even beginning to seep blood from them, so he embolized and killed as many of them in there as he could. He could NOT place a stent b/c of the length of damage to my portal vein, it was longer than he thought and by placing a stent it would close off the now necessary other veins feeding my liver (the other onese are blocked with clots now so we cant close off more). The internal intestinal flow has become a huge river and he is happy about that BUT the flow is all going towards my spleen. My spleen is getting bigger and bigger and something must be done about it or all that he has done will not help.

He didn't do anything while in there, but my surgeon and this radiologist will now AGAIN meet with the board of U of M physicians on tuesday, and will AGAIN get the opinion of 20+ surgeons. I like that U of M does this and it assures me that the right thing will be done for me, not just one Doctor thinking that he is the only answer. What does this radiologist think?

He told us that the blood supply going to my spleen has to be cut off, not all of it, just some of it to get that spleen to shrink down! If you cut some of the veins going to it, it won't be getting sooooo much blood supply and hopefully it will shrink to normal. My spleen is functioning fine so taking it out is not the answer he believes.... He also thinks that the "BIG ONE" might have to be done.

He wants to see how my body adapts to all the changes going on inside of it right now, I need to heal, and he did alot more than he thought he would and therefore I am in major pain. We left the hospital as late as we could to see how I would tollerate home pain meds alone and last night I was VERY close to telling steve to take me to the hospital. As long as I can knock myself out I am fine.

I have alot of questions, alot of things don't seem clear to me, I cannot even begin to explain how I feel about having more things done, I have been sedated 7 times in the past 60 days and have been living life out of body......I just get really down sometimes, and when I am in pain, it makes it that much worse. I miss my kids and can't wait to hug them again!

Dear Family and Friends,
The week has finally arrived! Steve and I will be taking off in the morning for Ann Arbor for an enjoyable day, doing some business ( I love watching my husband work!), taking some clients to lunch and then off to do a round of golf (hope they all have patience for me! ) We will be getting a hotel in Ann Arbor for the night b/c we need to be at the hospital at 7am on Thursday. My procedure starts at 8:30. At this time I don't have alot of information as to "What" they will be doing but what I do know is this:

It is an interventional Radiology procedure, not a full blown surgery. If this works, then hopefully we never have to do the "big one". The radiologist has a plan but we don't know what path it will be until we get in my body and try. 1st attempt: through my subclavian in my neck and femoral vein in my leg to get to the Portal Vein near my liver. He wants to get a shunt into that vein and basically "rotorudder" that clot out of there and get my flow going! If this doesn't work then 2nd attempt: going from my side through my liver, again trying to get into this portal vein. If this doesn't work then 3rd attempt, making an incision in my front abdomen directly at the Portal vein.

Why don't we know which? B/c of the extent of the new collaterals, the new veins that my body has created to by-pass this clot in my portal vein is like a major highway now. The veins could cause problems b/c we can't get into that portal vein b/c of all the others in the way.
I have a room reserved for a night. They are currently at 100% capacity, so reservations have been made for one night. Will I need it? If the first attempt works, probably not. If it doesn't, then I will.
What if all don't work? Then we have another meeting with my Gastroenterologist here in GR, the Liver Surgeon at U of M, the Radiologist who did it, and we have no choice but to do a major surgery. Down the road I might have to have the big one even if we do get this done. We don't know and don't want to do the "big one" until I bleed internally from the veins that have been created in my esophagus that I am currently getting "banded" or from one of my intestinal veins that are also getting bigger and bigger.

If this does work, my internal blood flow will go down, the veins internally will shrink in size and may even disappear, my spleen will return to normal, I won't have intestinal pain, and everything that has happened inside b/c of this clot will go away! We will follow up with a year of CT's and Ultrasounds and if all is well, I can quit my Lovenox injections, quit my beta blockers, and hopefully never see a Doctor as a patient agian!!

Please keep me, and my family in your prayers. I just can't stop thinking about my precious babies sleeping upstairs and wish I could be with them, but hopefully someday they will realize mom has to do what she needs to do right now to take care of herself and that they will in the end get their mom back, healthy and we can be together for the rest of my life however long that may be!

Love you all!

Lisa

What is exactly going on with me? This explains it all!

For some unknown reason(s) the portal vein is prone to developing a blood clot. This blood clot usually completely blocks the portal vein. ( mine isn't completely but it also isn't the first one I probably have had)

When the vein is blocked, it causes blood to back up in the vein causing high pressures in all the veins below it. (therefore the need for blood thinners, currently I am giving myself 2 injections a day and blood pressure med's. Even though I don't have high blood pressure, I have high Portal pressure, that is, internal blood pressure on my major organs, we need to slow that pressure down so that I don't bleed internally!)

The condition is medically known as portal vein thrombosis (PVT). In addition, the organs returning blood to the portal vein, like the spleen, get engorged with blood. In many cases, the body attempts to bypass this blocked vein by developing thin walled veins (collaterals). These collaterals are large and appear like varicosities (big vericose veins but on the inside of me) The majority of these varicose veins are seen at the lower end of the esophagus (eating tube) but may appear anywhere in the abdomen. This is why I have to keep getting these veins in my esophagus banded to prevent them from bleeding, in an attempt to make them smaller.

How common is portal vein thrombosis (PVT)?In the US, PVT is a relatively rare condition with an overall incidence of 5 per 10,000 individuals. So why did I get this?

• No liver failure (biopsy confirmed my liver is fine!)
• No cancer (after many tests, nothing has come back positive)
• No blood disorder (all my labs came back normal)
• Trauma or Pregnancy

The Doctors now believe that I got this when I was pregnant with Luke and things progressively worsened after my delivery. Doctors instructions: NO more babies!!!! Thank you Lord for blessing my life with 2 beautiful children.

When you have something wrong with you physically, it is easy to find yourself on an emotional rollercoaster. Yesterday was a bad day for me. I was in pain, didn't feel like eating, was tired, and just sick of having these things done. Its hard to stay positive and cheery all the time.
Then I try to look at pictures like this and realize all the things I should be thankful to the Lord for. My awesome mom who is always there for me if I need her and shows so much love to me and my children and everyone else for that matter!, my grandma who is 89! and of course my beautiful kids who always seem to amaze me at how awesome kids are. I LOVE my kids. And I have 2 of them, the way the Lord planned it for me. They are both healthy, smart, and adorable in a mothers eyes. Then me, I don't have cancer (like once thought), I don't have a incurable disease, I am not dying, and therefore I need to rejoice in the Lord for all he has done! We are truely blessed and I need to remember that! I thank the Lord for all he has given me and Thank you Lord that this journey will also pass and there will be an end in sight!

Banding of Esophageal Varices (Veins)

Today I went in for another banding of the varices (veins) in my esophagus. He said that they looked good (whatever that means) but he did alot more banding this time than last. So far it has been much worse than last time and I even cried leaving the Dr.'s recovery room for the way home b/c it hurt so bad. Last time I left, I couldn't wait to get some food and stopped at Wendy's for a Jr.bacon and fries! b/c you can't eat before your procedure. Today, that is the LAST thing I wanted to do b/c it hurt so bad. I just woke up alittle over an hour ago from taking a long nap and will keep popping more pain meds. It feels like severe heart burn but worse, something I can't explain. As you can imagine, food going down doesn't feel the greatest and I think I will stick to liquids for some time. I just can't believe all this has happened to me, the whole thing is crazy and I can't wait for it to be done. I miss my kids and wish they were home but I need some time alone for the day. Some day they will understand. Besides, being at Grandma and Grandpa's is always fun! Thank the Lord for them!

Make a Smilebox scrapbook

University of Michigan Hospital

Today I met with my surgeon at U of M. He was awesome!!!! We met for over an hour discussing my case, looking at my CT's, MRI's....He is the "fix-it" man, but the problem is, he doesn't know exactly what to do.

Some of my friends laugh at me, and it is a long story, but I am a Zebra. Most hospitals are filled with every day horses that all Dr's see, but me, I am a Zebra. The Zebra is the one everyone wants to see b/c it is rare.

On Tuesdays at U of M, a group of board physicians meet to discuss patients that they just don't know what to do with. He is going to bring my case to those physicians and together, a group of at least 20 Dr.'s will decide what the game plan is going to be. The good news, I have time. This is something we are going to monitor for now, until we know exactly what we all want to do and what is going to be best for me. The game plan : Meet with the board of physicians and show everyone he knows my case 2. I have to have a Venogram (a test that will measure the blood pressure outside of my liver compared to that of the pressure inside it) 3. He wants to talk to his favorite Interventional Radiologist 4. I am going to call him next week and every week for the next few months to see how I am doing and what we are going to do will be determined. So far here's our options:

1. Monitoring (do nothing) maybe with my next banding of my varices (veins in my esophagus) my gastroenterologist will see that they are going down in size, decreasing, and the blood thinners and blood pressure meds are working on their own.

2. Splenectomy (remove my spleen) get the pressure internally to balance thus decreasing the pressure on those big veins in my throat.

3. Stent (interventionally) from the inside of my liver past the blood clot (this would be ideal) Possible????

4. Shunt (huge surgery, cutting me open from side to side) connecting my portal vein to my vena cava with a shunt I would be in the hospital for a min. of 5 days and 2 months of recovery. Possibity of death. Then, would it clot agian???? Remember, we still don't know WHY this has happened.

So, I am to live life as normal as I can. NO cardio work, nothing that is going to raise my blood pressure alot, but I can work, I can take care of my kids....Wait.....Haven't I already been doing that???

We were very pleased with this Dr. He was very awesome, informative, sensitive, and gave us peace of mind that he is going to figure out what is best for me. I know I am in good hands there and I feel very confident. We will see!

Portal Vein Thrombosis (blood clot)

This blood clot that they found had been in my body a long time. How long? We don't know. We know its been there a long time b/c my body has since then developed a whole new venous system around it and throughout my liver and esophagus to take care of myself. (isn't the body amazing!!!!!!!!!) The body made all new vessels around this blood clot to get the blood it needed. Most clots are caused by 1.Liver disease or failure (I had a biopsy while in the hospital of my liver and it turned out fine (thank goodness) 2. Cancer (no cancer has been found yet) 3. Blood clotting disorder 4. Trauma= Pregnancy

After being release in the hospital I have undergone Upper Endoscopy that found my "new" veins in my esophagus to be sooooo big, they are like vericose veins and my Dr. told me that I have a 50% greater chance of hemmorhaging within one year. I must remain close to the hospital in case I start to bleed. We did a procedure that next Monday to wrap rubber bands around my veins to try to prevent them from bursting, and I will have it done again in 2 weeks.

I also have to have surgery, what kind, we don't know. I am going to U of M tomorrow to meet with a liver transplant/hepatobiliary reconstruction physician for advice. I must have something done soon b/c I could die. If these veins in my throat decide to start bleeding, I am now on blood thinners, so it could be the last time b/c they might not get them to stop.

Hope this explains my life for the past 14 months. I knew something was not right, but I couldn't get anyone to listen. Could this have been prevented? Why didn't that hematologist do something? Now I have to pay the consequences and am sitting wondering if I will see a new tomorrow.......The prayer I say at night with my daughter has taken on a WHOLE new meaning "Now I lay me down to sleep, I pray the Lord my soul to keep, if I die before I wake, I pray the Lord my sould to take." AMEN!

Abdominal Ascites (free-fluid)

After scanning myself again, I noticed a drastic change and decided to show a radiologist that I work with. He talked to me, asked me questions, and told me that he was going to call my Dr. in the morning and ask him to get to the bottom of this b/c something was seriously wrong. He didn't want to scare me but it could be Colon cancer, Ovarian, but something was very wrong and he was going to make sure that they didn't ignore me anymore. I developed Ascites, (free abdominal fluid) for some unknown reason to me. That was until my Dr. finally ordered me a real CT and we found a Portal Vein Blood Clot.

Splenomegaly

So let me explain myself. When I was pregnant with Luke I had some minor "blood" issues, with my platelets. Almost couldn't get an epidural (glad that changed). Delivered, and off they sent me. Well, 5 weeks post partum my stomach was still huge so they took xrays which reviled kidney stones, nothing else. So when I returned to work after maternity leave, I decided I wanted to see how many stones I had and I scanned myself. ( I love my job!) Yes I had alot of stones and that is when my great partner noticed how LARGE my spleen was. That got us thinking..... I went to my family Dr. with my findings of my spleen, he did some blood work, got me an Ultrasound, sent me to a Cancer and hematologist and that man told me that he is No spleen Dr., that most people sitting in his office KNOW they have cancer and are not there for him to figure out. Give it 6 months post partum and everything will return to normal. Well it didnt. I had issues with alot of weird things. Got me a new primary Dr. He ordered more labs....Then I became Anemic. Still no biggy to everyone but me. I even made a "fake" Dr.'s appointment about acne to talk to him SERIOUSLY. I told him, I don't want to diagnose myself with some disease but is it possible we could be missing something here? "no. I just think this is your year for things to happen."

That was until a month ago when I started having abdomen pain and I decided to scan myself AGAIN.

Small Bowel Capsule Endoscopy

Here I am! Man this stinks! For some reason this picture isn't working, I will have to fix it later. Sorry.

So I swallowed this camera today. It was really weird. I couldn't eat anything but jello yesterday and today after swallowing the camera, I couldn't eat until 1 pm and that was only soup, Nothing else all day or morning, not even my morning coffee! Man I hate not eating. Isn't it amazing how far technology and medicine has come! That you can swallow a camera and it can videotape you internally? That is crazy! I arrived at 8am to swallow the camera and get hooked up to leads and a monitor that would send an electrical signal to the monitor and record the images. I had to wear it all day and I returned the monitor at 4:30. They only have an 8 hour battery life. No I do not have to return the camera! :) Who knows when that will come out! It is big! I am sure there are some people out there that couldn't do it.

So I have reached a breaking point. Mentally. My mom told me today that I need prozac. Thanks mom. I would like to see how other people would feel after a month of injections 2xs a day, beta blockers that make me feel like crap, give me diahrea, headaches, dr.'s appointments every week, blood work every week, tests, not eating for days for your tests.....Yes, I will admit I am crabby.

I am sick of it. Yesterday I went to see my hematologist and was very excited to see what he had to say. Steve took time off work and the Dr. walks in and says, "so, you were here a year ago, what can I help you with?" Start telling him why I was there a year ago, that no one would listen to me, blood levels dropped, I became anemic, then hospitalized...."oh, I don't have any record of any of that, I guess a lot has changed, how have you been feeling?" Luckily I came with my OWN records, my OWN reports...and could show him. "oh, you have liver disease." No I do not. I had a biopsy done that confirmed no disease or failure, my liver is functioning fine. "well do you know what labs were done on you? Did they look for this strain, this....?" (how the heck am I supposed to know!!!!!)"Well, lets see what U of M says, do some blood work and I will talk to you on the phone next week." Out the door I went.

My husband knew I wanted to kill the man and quite frankly wanted to kill him himself. I was pissed. He knew nothing about me.

I can understand why my patients are frustrated with healthcare at times....This whole experience is teaching me sooooooo much. The Lord has it all happen for a reason, am I can promise you this, I will be so much stronger, more sympathetic, loving, to my patients b/c I can relate!

Today I can only eat jello and I am trying to get my mind off food. Tomorrow I swallow a camera, and can't eat all day, Yippe!:) Lord, please hold my hand today, I need you. Amen.

Make a Smilebox slideshow

Sometimes I look at my little Lukester and wonder if he will ever know all that I have gone through after bringing his precious life into this world. Not that it was his fault, but I don't think many women out there honestly think about all of the things that could and can go wrong during delivery. I definitely know that my Dr.'s should have taken my children by C-section. My body was not made to deliver babies. I LOVED being pregnant but when it came to deliver for Luke I was petrified. I remember crying on several occasions sitting in the Dr's office b/c I was so traumatized by the delivery of Karlie and feared going through it again or having something bad happen agian. Shoot, after only 45 minutes of pushing this time I thought it was a breeze....Little did I know that I wouldn't be walking for 2 weeks due to a seperated Pelvis and broken tailbone, and that my abdominal muscles were so ripped apart that anyone could put their fists inbetween them and that I would still be dealing with traumatic health issues over one year later! OH what children do to some mothers bodies. I unfortunately wasn't one of the blessed. But just looking into those blue eyes full of wonder, I couldn't imagine life without him. He is my little buddy. He has filled the empty space in my heart that I never even knew was missing until my Luke!

Today I had my 2nd MRI for my Gallbladder and Pancrease. On Tuesday I get to meet my Hematologist (finally! and hopefully some answers to the "why" this happened) and on Friday I head off to U of M to meet my surgeon and discuss what I need to do now to take care of "what" has happened. I am scared. I am relived so far to know that I don't have cancer, but I am still not in the clear. The reasons why: 1. Liver failure (which I don't have) 2. Cancer 3. Trauma to the body=Pregnancy........In the weeks ahead I think we will be finding out the answer.

Tonight, I thank the Lord for my 2 beautiful children that mean the world to me. I was told and thought I never would have children....and just look at them today! Dr's I showed you wrong!!! They are my miracles from the good Lord above. He has blessed me in so many ways and I can't imagine my life without them. I thank God all the time for blessing me with the ability to have children and the chance of re-living life through their eyes. I just wish I could freeze time and hold them in my arms forever, their so sweet, innocent, small, and they Love me! I love you Karlie, and I love you Luke!

What a change in life. I decided to go back to my blog b/c I feel that this will be good for me. That way I can talk and let out my feelings. I cannot believe what has happened to me in 3 weeks. I have been totally sedated on 4 occasions for different procedures, and I am beginning to realize why some of my patients aren't always so shall we say "pleasant". The medical system can be very frustrating and its never a fun experience when you are the patient no matter how friendly the staff. I think the Lord has given me a whole new perception on how to treat and care for my future patients. I have come to realize that the Lord DEFINITELY placed me in my career and he did it for sooooo many reasons b/c he can use me. I can be there for my patients and I can love them the way the Lord loves all of us.

Do I go back to work tomorrow or not? I don't honestly know. I am pretty stuborn when it comes to this kind of decision and tell myself I will be fine but honestly, I have my doubts this time. I am soooo tired, I have a head/sinus/ear cold on top of all thats going on. My troats feels hurts and I have major heartburn from my procedure on monday. Well, the kids need me, so maybe I will have time to write agian later.

Life is wonderful being a mother of 2!! I love being a mom so much. Luke is an awesome little guy, he is moms buddy and I am enjoying him so much. Being a mom is so much more fun the 2nd time b/c you actually learn how to enjoy the moments and you realize that it is over so quickly. They are only small for such a short time and then I will never have these days back again. Children are the greatest blessing and I thank the Lord every day for my amazing children.

The Jongsma Grandkids: Dylan, Karlie, Alexis, Luke and Jackson DeHoop. All of them are 4 and under. It was quite a challenge to photo them but it was fun.